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Starting in 2016 NCI caDSR team began participating in the NIH CDE Task Force (TF).  Subsequently a small group was formed to develop a recommendation for an NIH-wide CDE infrastructure.  The recommendation, the NIH Master Reference Dictionary Proposal,  was developed by a small group within the CDE TF, led by Matthew McAulffie - NIH Center for Information Technology (CIT) and including members from 9 institutes and National Library of Medicine (NLM), from 2017 to August of 2018 when the proposal was delivered to NIH Scientific Data Council (SDC).

The 9 Institutes involved in MDR Proposal development:

  • NIH Center for Information Technology (CIT)
  • National Cancer Institute (NCI)
  • National Eye Institute (NEI)
  • National Heart, Lung, and Blood Institute (NHLBI)
  • National Human Genome Research Institute (NHGRI) 
  • National Institute of Biomedical Imaging and Bioengineering (NIBIB)
  • National Institutes on Diabetes and Digestive and Kidney Diseases (NIDDK)
  • National Institute of Mental Health (NIMH)
  • National Institute on Minority Health and Health Disparities (NIMHD)
  • National Institute of Nursing Research (NINR)

The proposal was for an evolving infrastructure to leverage the institutes existing CDE infrastructure and expand capabilities for interoperability with the NIH CDE Repository.  The proposal also recommended establishment of a governance process to harmonize CDEs across the institutes where appropriate. 


Subsequently, the NLM made a recommendation that the NIH adopt FHIR Structures for CDEs, suggesting that the FHIR Observation could be used for 90% of the NIH CDEs. See the presentation given by Dr. Clem McDonald to the NIH Scientific Data Council in March 25, 2019.

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